Usher Parents Is it Possible

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Usher Parents Is it Possible?

• By Emma Boswell
• October 2008

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Introduction

• What is the aim of the workshop?
• What does Usher Parents Is It Possible? mean?
• Why is it important?
• Pregnancy - what are the challenges?
• 25 years on - has people's perspective
  attitudes changed?
• Where to find information on parenting?
• Are resources available from the Usher /
  Deafblind / Deaf Community?
• What planning is needed to support Usher Parents
  in the future?
• Research Project
• A group discussion will be included in this
  workshop.
• Please feel free to ask questions at any time

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What is the aim of the workshop?

• The aim of the workshop is to explore and
  understand the depth of Usher parenting this is
  the first time any research has been carried out
  on this subject.
• Are there any other areas which we will need to
  do more research on in the future?

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What does Usher Parents Is it Possible? mean?

• In modern society in the UK, disabled people have
  more freedom to make their own personal choices
• However there remains a negative portrayal of
  disability within some cultures in society where
  shame and stigma still exists
• Are Usher people capable of being parents?

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Methodology

• Sending Usher Mothers Fathers questionnaires by
  email or face to face (BSL)
• Asking social workers questions
• Contacting charities if any support groups or
  resources for Usher / deaf parents
• Contacting Eye specialist

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Why is it important?

• First research of this type that has been carried
  out
• To investigate and to see if there is a need for
  a support group or to develop further resources
  for Usher / deaf parents
• ADBN is focusing on Activity, ability
  participation Acquired Deafblindness in all
  stages of life this year

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Conducting the survey

• Developing questionnaires
• Support from work colleagues
• 9 people with Usher Type 1
• 2 people with Usher Type 2
• 10 women and 1 man
• Ethnicity - 9 white 2 Asian
• Responses total 11

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PregnancyWhat are the challenges?

• Quote from one respondent
• I could not use hands on communication for my
  scan as it is difficult to use when lying down on
  the couch.

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• High percentage of Usher Mothers had excellent
  support from health care professionals and
  ante-natal classes
• 3 respondents - bump affected balance
• 5 respondents For the 12 weeks scan, room too
  dark
• 3 respondents - no interpreter for the scan
• 6 respondents - happy with provision of
  interpreters for ante classes seeing midwife
• 1 respondent had one to one support in ante-
  class
• 1 respondent - used family member for note
  taking in ante-class
• 2 respondents - had interpreters during labour.

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After the birth

• 100 of respondents - had hearing babies /
  children
• Support availability not much support
• Health Visitors supportive with Usher Parents
• No interpreters provided for local baby group
• Challenge in finding a nursery without word of
  mouth
• 5 respondents - think their vision has
  deteriorated
• Eye specialists comment - It is rare for female
  mothers with Usher to comment on how their vision
  has deteriorated particularly in pregnancy but
  know of no specific research looking into this
  issue
• Worsening vision reported by Usher mothers is
  it the natural process of deterioration of RP or
  is having child/ren an additional risk factor?

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Bringing up a baby / children

• Nothing will stop Usher people becoming parents

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GROUP DISCUSSION

• Group discussion split into 2 groups
• Group A) Need to identify a list of challenges
  that Usher Parents face when their baby /
  children are born
• Group B) Should Usher parents receive support
  with their hearing children in the early stages
  of their baby / childrens development? Should
  charities provide more support for Usher / deaf
  parents?

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Views of the respondents in this survey

• 100 think charities should provide better
  services for Usher / deaf parents
• 54.5 think they should receive support with
  hearing children from the early stages of their
  baby / childrens life
• 18.2 disagreed One said its because he has a
  hearing wife the other believes in using sign
  language and natural communication
• 63.6 have concerns about their baby / childrens
  development because they are deaf

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What are the challenges for Usher Parents when
their baby / children are born?

• QUOTE "An Usher mother takes her hearing baby
  to a local hearing mother baby club because she
  feels it is important for her baby to develop
  with other hearing children. Also the club is the
  place where the Usher mother can discuss issues
  or ask for advice from the other mothers.

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• Despite her well meaning intentions the Usher
  mother has no interpreter support due to no
  funding and therefore she cannot participate in
  the group fully on equal basis as other mothers
  who are hearing."

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0-5

• Little or no funding from Mother Baby clubs or
  nurseries to provide interpreters
• Attend local hearing mother baby club
• Missing out sharing vital information, for
  example, which nursery is recommended due to lack
  of provision of interpreter
• Deaf parents club in one area only which means
  many parents had to travel from different areas
  and some are unable to travel
• Transport problems.

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Advantages

• Using buggy/pushchairs helps balance and prevents
  bumping into people
• Usher Parents can attend deaf parents club and
  hearing Mother Club if they want to their
  babies/toddlers to mix with their own culture

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Over 5s

• Quote 'I do not want hearing children becoming
  young carers for the Usher Parents.
  Unfortunately my child already became my carer as
  there is not enough support out there'

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Over 5s (part 1)

• Schools
• School Play
• Parents meeting other hearing parents
• Difficult to make friends with hearing parents
• As children develop their English language to
  advanced level, some Usher parents find difficult
  to teach their children
• Teachers seem reluctant to find time to discuss
  children with Usher parents

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Over 5s (part 2)

• Activity Clubs after school challenging as
  Usher parents cant see in the dark or drive
  their children
• Depends on where Usher parents live
• Usher parents usually are low earners which means
  they cannot afford to buy property within
  walking distance to a school and activity clubs
• Usher parents will include their children's
  friends to stay overnight
• Transport

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Advantages

• Gives a lot of love and laughter
• Shared experiences

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How the barriers can be removed for Usher / deaf
parents

• Involve Usher people in professional training
  courses i.e. interpreters, social workers
• More Communicator-Guides for Usher Parents
• Funding should be provided in the UK for support
  in the home and family
• Usher / Deaf Awareness in nurseries and schools
• Charities to support Usher / deaf parents
• Provision of Interpreters should be automatic in
  all their childrens development and activities

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25 years on- has people's perspective attitudes
changed?

• 40-50 years ago, Usher parents were deemed
  incapable of bringing up a child just because
  they have Usher
• Comment from Social Workers - To remove a child
  from their parents is a long process and it would
  have to involve abuse or neglect. If parent is
  Usher, is not a reason to remove the child.
  Strong evidence would be needed to prove that the
  child is at risk or not being cared for properly
• One respondent had one professional telling her,
  'you should never have got pregnant
• Another respondent said her relatives did try to
  take her baby away because he is deaf.

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Where can you find information on parenting?
Are there any resources within the Usher /
Deafblind / Deaf Community?

• Deaf Pregnancy book by RNID charity
• Deaf Parenting UK

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What planning is needed to support all Usher
Parents in the future?

• Charities should give full support and resources
  to Usher / deaf parents
• Need some improving with their children's schools
  e.g. awareness

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Future Research Project

• More questions still need to be answered so more
  research on Usher Parents is needed
• More improvements needed to services in
  supporting Usher parents
• Would you or your country be interested to be
  involved with future research project?
• Research Funding - could we ask the EU?
• Should we work with other groups i.e. Deaf,
  deafblind parents?

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Conclusion

• We have a better insights into the challenges
  faced by Usher Parents
• People with Usher can dream of being a parent and
  having a family like anyone from the wider
  community
• Thank you for listening.

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Acknowledgements

• With thanks to Sarah Reed and Tamsin Wengraf for
  their tremendous hard work during my maternity
  leave
• Social workers Patrick Claydon and Christine
  Ashby
• Mr Webster
• Mary Guest
• All participants from the survey
• A number of charities.